Thursday, April 1, 2010

When I was first diagnosed with dysplasia (abnormal cells on my cervix) I of course googled it every which way and sideways. I wanted to know:
1) the best case scenario (it would go away on its own or possibly be a false positive)

2) the most likely scenario (it would be easily treatable and probably never come back but if it did it would be easily treatable)

and, of course:

3) the worst case scenario (it would turn out to be the early stages of cancer and require a hysterectomy to make sure there was no place for it to begin another silent and potentially deadly invasion.)

"A hysterectomy!", thought I. "Do they still do those?"

In my mind hysterectomies were synonymous with female hysteria. They had something to do with ancient Greek medical quackery pinpointing the womb as the source of all disease. They were also all twisted up in my imagination with manic Victorian doctors who practiced pelvic massage, leeching, and vivisection to remedy things such as humours, taints and lunacy.

Cleary I've taken one too many women's studies classes. Or perhaps several too few.

"Oh, the horror! The horror!" Thought I. "What an awful thing for any woman to have to endure. Why -- those women must feel positively castrated. They must feel like husks of women. To lose your womb -- GUH! I just couldn't bear it. How could it be borne?"

I pictured myself lying in a hospital bed, hollowed out, clumsily re-sewn, and weeping. My hair would be brittle and the flowers at my bedside would be drooping as I assuredly began a steep and irrevocable decent into madness.

Then I re-assured myself that that wasn't going to happen to me. I eat a minimum of five servings of fruit and vegetables per day. I workout. I do yoga. I walk the dog. I take careof myself, dammit.

But then I supposed if it did happen to me... well then I would bear it much like I've borne any of the other variously sized balls of crap that life has flung at me thus far -- I'd pick myself up, I'd dust myself off, and I'd put one foot in front of the other and I'd get on with it.

Well now. It was cancer and it did happen to me.

My doctor, a specialist in gynecological oncology, advised me to have a hysterectomy three months after the birth of my last child. My husband and I discussed his recommendation with two other doctors and they both heartily advised the same thing.

If you're done having children, they insisted, you have absolutely nothing to lose by having your uterus removed. Cancer is unpredictable -- deal with it as soon as you can. Not getting the surgery would be like Russian roulette -- don't take chances with your life, they urged. This will cure you. You are lucky.

There was just no realistic way around it. I mean, I know you can buy magnetic bracelets that will reverse the polarity of cancer and also cure arthritis, Alzheimer's, allergies and erectile dysfunction but... I have kids to raise! It is very important that I live.

I couldn't say the word "hysterectomy" without tearing up. I'm an emotional person anyway but this whole ordeal occurred over two post-natal recoveries and one pregnancy. So let's tack the word "very" onto "emotional," shall we?

I know my doctors' reassurances that a uterus doesn't do anything but gestate children and cause menstrual pain were well-meaning. But I'm not so much a literal thinker. I'm not only a published poet, an artist, and a total flake, but, as you've surely gathered by now, I am a WOMAN. I very much dwell in the milieu of symbolism, implication, nuance, and nostalgia. If I can't throw away my children's baby shoes (which, technically, do nothing but protect an infant's feet from the elements) how could I toss out MY WOMB?

Here's what happened:

Three months after my baby was born I went for another colposcopy. My cervix was normal. My doctor, the gynecological oncologist, then kinda dumped me without much of an explanation. I think my troubles were too routine for him. He said he'd be happy to do the surgery for me but his waitlist was too long. He wouldn't recommend waiting for him, he'd recommend finding someone else to do it as soon as possible. So I went to my family doctor to get referred to another gyn for the procedure. We met with that other gyn and then took some extra time to make sure sure we didn't need to preserve my fertility by trying some other procedure (a cone biopsy) that wasn't really recommended for me and would probably need to be followed up by a hysterectomy anyway so that I could have a fourth child.

It never occurred to me before this whole schmozzle to have four children (Dear Lord!) and so it was basically just procrastination. We knew for sure we were simply stalling when I saw an ad for a photography studio and turned to my husband to say, totally off the cuff, "You know, maybe we should book a session with a professional photographer and get a nice, big cheesy family portrait done, now that we're all here."

Now that we're all here.

You know? Sometimes you just know.

But with three very young children I was terrified of being bedridden and unable to care for them. The recovery period for a hysterectomy is 6-8 weeks. That's how much time it is recommended that you take off work. But how can a full-time mom take two months off "work"? It's just not do-able. Not in the least.

And then there was a 3-4 day hospital stay to deal with.

The doctor assured me I wouldn't have to wean my little nurslings but I would need a lot of help as I must not lift anything over 10 pounds for a full six weeks -- so no grocery bags, no laundry baskets, and no lifting children.

No lifting my baby! And no lifting my other baby!

You can get someone to hand you your baby and then you can sit with her in your lap, my doctor explained. You just can't lift her up by yourself. And definitely don't lift your 19 month old, he said, no way.

Other than family, we decided not to tell anyone. I felt an intense need for privacy. I just wanted to get through it without needing to reassure everyone that I was fine. I didn't want to have to put on a good show and a brave face. I didn't want to be talked about and I didn't want to be pitied. I'm like that.

Calling my mom and explaining what was wrong and what I needed was difficult.

She promised to help as much as I needed her to.

My mother-in-law made sure to express her dissapointment that I wasn't going to bear her more grandsons. But she said she'd help out in any way we needed her to. She was, she always is, kind to me.

My greatest anxiety by far was handing off care of my kids. I knew the special task force of Grandma, Grandma, Grandpa and Daddy would be fine -- better than fine. We'd been bottle-training my breastfed baby since she was super-wee and there was milk in the freezer for her. She sleeps well through the night. The older kids had overnighters at their Grandma's before and considered them to be super-fun special mini-holidays. We tucked them in at Grandma's place the night before the surgery.

My parents drove up from out of town to take care of my baby in our home so that my husband could spend the big day at my bedside. Everyone would be well cared for. But I couldn't help imagining my baby daughter crying and crying and crying for me, her blue eyes frantic, and there'd be nothing I could do about it from the hospital, and no one would be able to calm her down because she just wanted her mommy.

The big day came.

I cried and cried to put my baby in my mom's arms and to leave my home. I cried a little more on the way to the hospital and then started up again when I disrobed behind a little curtain and stood naked before my husband. I cried on the way to the holding room as the dude wheeled me through the corridors. I cried when my doctor asked me how I was. I cried when I said goodbye to my husband. And I cried as I looked around the operating room bidding a silent farewell to my uterus.

It was a good uterus.

I woke up explaining to one of the voices in the recovery room that airport security would X-ray her loaf of bread before she took it on the airplane.

"They will X-ray my bread," said the voice kindly.

The next thing I recall is a crowd of people instructing me to wriggle my body off the super-fly wheely-bed and onto a hospital cot. It hurt. Just lying there wasn't so bad but moving was awful. I'm pretty sure I swore at at least one of those people. I was so glad when they finally stopped fumbling with things and taking my blood pressure and showing me the flowers on my bedside table and left me to fall back asleep.

Then I wished my husband was there and when I opened my eyes he was.

That was two weeks ago today.

Getting out of bed for the first time was quite scary and painful. So was going pee. But a nurse helped me. She got all the tubes and such out of me and off of me and I got dressed in my own pajamas. The next time I got out of bed was much easier. And the next time was even easier. They measured all my pee output in a "hat." I was pretty much a champion in that department.

24-hours after my surgery (my doctor told me to pump and dump for 24 hours until the anaesthetic was out of my system) my parents brought my baby to me all decked out in some white, super-soft, frou frou outfit with kitten ears on it. When they brought her into my room she looked very cheerful and when she recognized my face she positively beamed.

She was fine. She'd spent the last 24-hours being cuddled and cooed at by her daddy and her grandparents and she was just fine. After her meal (me) she fell asleep in my arms.

I got out of the hospital early for good behaviour. And by good behaviour I mean farting. The doctors were very interested in my farts. Getting your bowels moving after abdominal surgery is, apparently, the hard part. They recommended getting up and moving around as much as possible. Managing my milk supply involved sterilizing my pump components in a microwave at one end of a long hallway and freezing the milk at a nursing station at the other end. All that walking was just what the doctors ordered and I farted within 48 hours and got to go home after just two sleeps.

It certainly is an interesting personal exercise to let your husband and parents take care of your children while you lay about watching DVDs, reading, and blogging.

I didn't realize how much my husband made me laugh until every time he did I'd suffer such intense pain.

And something wonderful happened to my father while I was in the hospital. He is 75-years old and has had five children and eight grandchildren. But he has never in his life rocked a baby to sleep or bottle-fed a baby because that is, clearly, women's work. Well he has now. And he can't believe he waited so long.

My recovery has been, thus far anyway, what you would call "speedy." I'm definitely (knock-on-wood) doing what is medically known as "bouncing back." I've been getting so remarkably much stronger every day. It barely even hurts to sneeze now. I've washed that hospital smell out of my hair and scrubbed the iodine stains off my belly.

And there has been no weeping. There has been no decent into madness.

I'm not saying my journey is over. I've got some healing to do yet. But I've slayed the Jabberwock and I've defeated the Red Queen and now I am back home.

I just feel so very very much on the other side of this thing and so very glad to be here.

I am so very sorry you have had to go through this, and I'm sorry for being sorry, because I know you're tired of people saying that. But I am.

I get what you mean about not wanting to give up your uterus, even if you know you don't intend to have more children. It's a silly comparison, but when Conan O'Brien's show got canceled, me and hubby felt bad for not watching it and being part of the low ratings. We loved Conan and were sad he was leaving, and as hubby said, "It's like the rain forest. I won't ever go, but it's still nice to know it's there."

You are such a strong person. I imagine you didn't feel very strong while you were going through this, all weepy and such, but I'd say it's your ability to make wise decisions in the midst of the grief that makes you strong. A lesser woman would have just given up her lady parts and not made it a big deal. You made it a big deal and still did it anyway. That takes guts.

I'm gonna go out on a limb and say that it's not the parts they took that made you a woman. It's the one they left - your heart, so full of love for the ones you created that you sacrificed a defining part of yourself for their sake.

I don't really know what to write. I've never had to cope with anything so extreme so I can't imagine what a horrible time you've had. All I can think is how hard it must have been to grow your new baby and focus on the joy of bringing a new life into the world, when all the time you had to carry around the knowledge that you had cancer.

But I have definitely learnt a lot from your story and I am really glad you wrote it. I hope for you that this is the end of the story and you can put it behind you for the rest of your life. And on a more practical level, I hope your recovery is going well and you are feeling back to your old self.

Operative hysteroscopic surgery: Hysteroscopy is a procedure used to look inside a woman's uterus. If an abnormal condition is detected during the diagnostic procedure, operative hysteroscopy can often be performed to correct it at the same time, avoiding the need for second surgery.

I just commented on another blog of yours, one about post op intimacy :) I'm glad I read this one too! Made me laugh and made me feel even more optimistic about surgery. I wonder what I'll say when I come out of anasthesia?! Hmm ... We'll see! Blogging is a good idea. I've never been short on words :) thanks again for being encouraging by just being you :)

Truly inspiring story Betsy! In a few weeks I too will be going under the knife (so to speak) for a laparoscopic hysterectomy and after hearing your story I feel like it will be a piece of cake. I hope you are feeling better and thank you so much!